Saturday, February 26, 2011

Updates

1. A few weeks backs, I posted about our struggle with spasticity management. At that time, I really thought we were heading towards surgery sooner than later. Well, a few days after that post, we had a conference call with Ben's physiatrist and one of his many PT's. It was a good call. After much discussion, the real conclusion that we came to, is that I want to gather as many opinions about Ben as I can so that we can make the best decisions for him. I really want to go to Gillette's Children's and have a gait study done and hear about what they think would be best for Ben. But I think that's about a year away. Ben is not always super cooperative, and I think in order to really do this, he needs to be a bit older. So for now, we stick with the botox and serial casting. Which leads to update #2...

2. I also told you guys that Ben was going for botox under general anesthetic a few weeks back. I was nervous about him being under general...but it all went really well. My kid continues to surprise me when it comes to doctors, hospitals, etc. He was an angel. He went off to the operating room on his own with me (which was very hard on me by the way) and did wonderfully. Didn't fight the mask at all apparently. When we saw him about a half hour later, he was awake and enjoying a lime popsicle. After about 45 minutes, we got him dressed and took him home. He is already standing and walking better. I can't believe it actually. And we're only 8 days in.

3. So we'll do another couple weeks of casts starting on Wednesday of this week to make sure to stretch those calf muscles as much as we can while the botox is effective. Luckily, he loves having "red boots" and its really not an issue for us at all at this point.

4. We're going to be doing another week of Conductive Education the week of the 14th of March. Again, with cute little Sarah. I'm really excited about it. Ben is doing so well with standing at home that I really hope we can make some real progress when we're there...and I hope to see him walking independently with canes this time too.

5. We're anxiously awaiting the start of Spring here. We've been hit with so much snow this winter that we can barely see out our front windows. We just got another foot of the white stuff last night. Now when I'm in my driveway, I can't see over the snowbanks into the neighbour's yard. If we're lucky, we might see the grass by July!

6. In preparation for Spring / Summer, we've signed Ben back up for Therapeutic Riding again. We actually participated in a fundraising event for the riding club this afternoon...bagging groceries at the local grocery store. People were so kind and generous once they figured out what we were raising money for. And I've signed Daniel up to play soccer. It's time for Daniel to have something that's just his. Ben gets to do so much and Daniel usually either stays home or goes to watch. So he gets his own special thing this summer.

7. And we're counting down to our Florida vacation. We're going back to the same resort as last year in Fort Myers. We loved it and it was perfect for the boys so we're heading back there. It's still over 2 months away though. My husband is a tax accountant and the filing deadline here in Canada isn't until the 30th of April so we have to wait til May.

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Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be. ~The Water Giver

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I'm a Part-Time Work-at-Home Mom to my twin boys, Daniel and Benjamin. They were born in September 2007 at just 30 weeks and 2 days (that's almost 10 weeks early). After 8 weeks and 1 day, we were finally able to bring them home from the hospital. A week after their first birthday, my sweet boy Ben was diagnosed with Cerebral Palsy. This blog is mostly about Ben's accomplishments and challenges but is also about me, my family and anything I feel like sharing. Email me at aboutthesmallstuff at hotmail dot com